Parkinson's Trial Points Toward Treatment Research Innovations

23andMe announced it has enrolled more than 2,000 patients into its Parkinson's Disease "community" since it first started recruiting Parkinson's patients for genetic testing about a month ago. This is a pretty major achievement in terms of patient recruitment--and something 23andMe has achieved by partnering with the Michael J. Fox Foundation and the Parkinson's Institute whose "networks of patients have responded overwhelmingly."

The innovative use of business-nonprofit partnerships is one of several notable aspects of 23andMe's Parkinson's registry--an example of what disease nonprofits are calling venture philanthropy. A growing group of disease nonprofits, including the Fox Foundation, the Cystic Fibrosis Foundation and several others, have taken more active roles in investing in translational research aimed at drug development. One important tactic, noted in a white paper commissioned by Health and Human Services on personalized medicine, is to aid in recruiting patients because the challenges of finding patients for clinical trials dramatically increases the costs and delays of developing medical treatments.

Patients in the Parkinson's trial have not only enrolled quickly; they're engaged. Indeed, 23andMe is using the word "community"--and not medical terms like database or patient registry--to describe participants. And people are participating. In addition to paying to join the trial, patients are filling out symptom surveys, and more interestingly, able to join into online discussions and social networking around their symptoms of the disease. All this points toward a group of patients who are unwilling to wait for researchers to find them and are instead actively participating in research to seek out a cure.